Death… the last taboo

It hap­pens to all of us, so why won't we talk about it?

Pick Me Up! - - CONTENTS -

hen­ever He­len Jami­son catches a glimpse of her mum’s pic­ture on the man­tel­piece, she smiles sadly.

She lost her mum Gill in 2008 but the pain is still raw.

Gill was di­ag­nosed with ovarian can­cer in 2006, when she was just 53.

‘I was there when she had the ap­point­ment telling her she had can­cer,’ He­len, 38, says. ‘It was a very dis­tress­ing time for her as well as my dad, brother and me.

‘Mum was a strong, dig­ni­fied woman, though, who just loved life. We asked doc­tors about her prog­no­sis but they were quite vague about what we could ex­pect.

‘They said there was still a chance she’d be alive in five years time, but that didn’t help us.

‘We didn’t know if Mum

Whad years left, months or even weeks.’ Gill be­gan chemo­ther­apy treat­ment but, two years later, her con­di­tion de­te­ri­o­rated. ‘The last four months of her life were very dif­fi­cult,’ says He­len, from Manch­ester.

‘We were led to be­lieve by her health­care team that her fi­nal mo­ments would be peace­ful, calm and com­fort­able, but this wasn’t the case at all.

‘Mum just wasn’t her­self, her per­son­al­ity changed and she be­came very dis­tressed and ag­gres­sive. It was so hard as a fam­ily to see her like that. We weren’t warned that this could hap­pen. We didn’t know any­thing.

‘To­wards the end, she slept more and we were told she didn’t have long left. So we brought Mum home and put her bed in the liv­ing room.

‘We thought it’d only be a few days. None of us wanted to leave her, in case she slipped away. But Mum clung on for sev­eral more weeks and, in the end, we ran out of food in the house.

‘I kept ask­ing doc­tors about how we’d know when Mum’s time was com­ing to an end. I wanted to know if there were any signs we could look out for. But no­body seemed to want to tell us.

‘Death and dy­ing is such a dif­fi­cult sub­ject to talk about, so peo­ple just don’t speak about it at all. And, as a re­sult, fam­i­lies like ours are left with unan­swered ques­tions and feel­ing com­pletely un­pre­pared.’ In Septem­ber 2008,

Gill passed away.

But, as she grieved, He­len was also left feel­ing lost, con­fused and dis­ap­pointed at the lack of in­for­ma­tion she’d re­ceived about her mum’s pal­lia­tive care. She wanted to help dy­ing peo­ple and their fam­i­lies to gain some un­der­stand­ing about what to ex­pect to­wards the end.

‘Some­one told me about

It is es­ti­mated that over 21% of all deaths in Eng­land take place in a care home.

a char­ity called Com­pas­sion in Dy­ing,’ He­len says. ‘It was look­ing for new trustees, so I de­cided to get in­volved.

‘It was im­por­tant for me to share my mum’s story and start ad­dress­ing the is­sues.

‘Birth and death are the two things we all have in com­mon. Yet death is a sub­ject that’s avoided, and this needs to change.’

Com­pas­sion in Dy­ing is fo­cussed on in­form­ing peo­ple about what rights and choices they can make un­der the cur­rent law con­cern­ing their care and treat­ment at the end of life.

It also aims to em­power them to make the de­ci­sions that are right for them.

The char­ity con­sulted with 600 peo­ple and found that they were of­ten not given clear in­for­ma­tion about their con­di­tion, ap­pro­pri­ate sup­port to make choices, or suf­fi­cient op­por­tu­ni­ties to dis­cuss their fu­ture health­care and treat­ment.

To tackle this is­sue, the char­ity has launched a new book­let, What Now? Ques­tions to ask af­ter a ter­mi­nal di­ag­no­sis. The book­let uses the au­then­tic voices of dy­ing peo­ple and car­ers, and in­cludes in­for­ma­tion about the range of thoughts, feel­ings and ex­pe­ri­ences peo­ple can have af­ter a ter­mi­nal di­ag­no­sis. It also con­tains im­por­tant ques­tions that peo­ple can take with them to ap­point­ments, to help them get the in­for­ma­tion that’s right for them.

The book­let is de­signed to help peo­ple feel con­fi­dent and in con­trol, and to help avoid any ex­tra trauma for fam­i­lies who are un­pre­pared for los­ing a loved one.

‘Sup­port in this form would’ve been in­valu­able to me,’ He­len says. ‘Just hav­ing that in­for­ma­tion, know­ing who to ask what ques­tions and where I could go to get the sup­port I needed, would’ve helped me come to terms with los­ing my mum.

‘I just hope other peo­ple will ben­e­fit from it. Dy­ing is some­thing that we all face, so we need to start talk­ing about it. Fear­ing it isn’t healthy.

‘How­ever, be­ing pre­pared and know­ing what to ex­pect can make the process a lot eas­ier to ac­cept.’

We live so much longer. Just over a cen­tury ago, the av­er­age life ex­pectancy for men was 48, 54 for women.

He­len with Gill when she got her Mas­ters

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